Our “Life after violence” report (here the easy-to-read version) shows the different forms in which women with intellectual disabilities are subjected to violence in institutions. The best way to address this is giving them the opportunity to live a life in the community. How does it look like when someone is included successfully in the community? Julia (we changed her name in this text) is an example of someone who has left the institution with great support. She is now living a far more inclusive life, thanks to her parents and circle of support.

Below is Julia’s parent’s story of her transition from institutional life into the community. Julia was always seen as too disabled to be involved in the community, or even to be involved within the houses she lived in when other inhabitants were ‘more able’ than she was. She was destined to a life of drowsing and children’s songs. When she became too bored with life she would slump in her chair and sleep most of the time. Her parents saw this as a sign that Julia was really unhappy where she was: And they decided to move her out of the institution, into her own home.

“When Julia moved into her own home, we first looked at which support workers she wanted to take with her. There were 5 people she wanted to ask to make this step with her, to this new place, working only with Julia. The people who came were only working with Julia. The aim was to create a good life together with Julia.

For support workers this was a very different situation. Suddenly they had no direct colleagues. In the beginning we kept a close eye on how everyone was doing. It is important to talk to everyone to make sure everyone is happy. Out of the 5 support workers who came, 4 stayed on.

Julia is always involved with the interviews of potential new staff. There is also always someone present whom she trusts from her circle and another team member. Nobody is given the job to support Julia after the first interview. There is always time to reflect and think about the conversation. Then later Julia and the others decide. We have met many people this way. We always ask whether someone is good at making contact with other people. Furthermore it is important that someone can listen to what Julia says without using words. And someone has to be interested in exploring the community together with Julia.

All of us have to think about what a good life for Julia means.

All of us have to think about what a good life for Julia means. And what responsibilities choices bring with them. If you live alone, not in an institution, you have to do the housework. Julia as well as any other person living alone. If you decide to have a dog you have to take it for walks. Julia as well. A good life is not the same as just having fun all the time.

It is important that support workers use the people they know through their own lives. You become part of each others’ lives, rather than keeping everything separate. It is important to find out which support worker has which interests and talents, and to use these.

It was important to start small. We made sure we did not try everything at the same time, and we did not make the week too full to start with. Just try one small thing at a time. For instance, start swimming in the community pool instead of the institutional pool. You are guaranteed to meet some people from your local community that way.

“Julia has a valuable contribution to make”

It is also good to invite your closest neighbours when you move in. You do not have to make this complicated, just something simple will do. This will quickly get you a lot of contacts in your immediate surroundings.

Julia indicated she wanted to work at the garden center. Time was needed for them to want her, too. We had to start very slowly and carefully. Starting with one hour instead of a whole week. Nowadays, the people at the center would struggle to get through Julia’s holidays when she and her support worker do not turn up. Julia has a valuable contribution to make. That is what we always aim for.

In the 6 years Julia has lived alone, she has slowly increased how active her week is. She has come to know many people in her neighbourhood and now has an important role in connecting neighbours to each other. The local development officer regularly asks for her help in distributing leaflets about upcoming events. Also, Julia and her support worker regularly babysit. This started with a nephew of one of the support workers. Julia loved having kids around. Now various parents in the neighbourhood ask Julia to babysit their children too.

To get to know people Julia organises a dinner every Wednesday. She invites someone she knows and asks them to bring someone she doesn’t know. Julia prepares the meal together with her support worker.

When Julia had just moved out of the institution a lot depended on her parents. They encouraged support workers to contact each other when something was wrong, instead of phoning them. They also organised training sessions, mainly to ‘unlearn’ behaviour that support workers had learnt in college or institutional settings. Once a year Julia, her parents, her circle of support and her support workers have dinner together. They talk about what a good life is and what this means for Julia. They do not have any team meetings. To inform everyone of what is happening Julia keeps a diary, which she writes with the help of her support workers. Everyday 1 A4 sheet of paper is filled with information that helps to keep Julia healthy and safe. Once a month they write a summary of what happened that month. This should never be more than 1 A4 piece of paper, because why would anyone want to read more when they could be working with Julia.

As time progressed the support workers and Julia became more independent. Julia’s mother explains: ‘We notice that we can be just parents now.’”

From Julia we can learn that nobody is “too disabled to be involved in the community”. Staff working in institutions who get to know Julia claim their ‘clients’ could not do what she does precisely because “she is less disabled than the people we work with.” But this is not true, Julia is not “less disabled”. She seemed like a totally different person when she was living in the institutions, because of the life she was forced to lead there. When she moved out, she had a network of people around who really cared and worked for a good life, together with her. When people meet Julia now, they see someone who is awake and intensely enjoying life.